My son’s pulmonary arterial hypertension (PAH) was idiopathic, which means it developed suddenly with no known cause. He was healthy until he became symptomatic at 6 years old. Before then, we only brought him to the doctor for checkups and the occasional ear infection.
He was an early walker who quickly mastered running and decided that was his preferred pace. His daycare providers were concerned that this little toddler was going to hurt himself because he wouldn’t slow down. As he grew into a little boy, he took off into sports, playing soccer and T-ball, and taking karate classes.
Perhaps it was a slow progression. We weren’t looking for any health concerns, so the decline in his energy levels seemed to happen suddenly. We suspected something was wrong when instead of running, he would walk the soccer field with his arms above his head, taking deep breaths. We knew something was amiss when just as he was about to score a goal, he sat down on the field insisting he couldn’t go any further.
Self-preservation taught him to walk instead of run, and two years later, he was diagnosed with PAH. For the next five years, our lives revolved around making different types of goals for him, such as staying well enough to graduate from the eighth grade, and remaining sufficiently stable to receive a heart and double-lung transplant.
A few weeks shy of what would have been the start of his freshman year of high school, my son received his life-saving transplant. While his peers were making new friends and settling into their classes, he was recovering from major surgery. A week after transplant, he became ill with posterior reversible encephalopathy syndrome (PRES), a rare side effect from an antirejection medication that caused chronic migraines and seizures.
The cure was switching medications, but the PRES symptoms remained for several months, making it impossible for him to attempt any schoolwork. Five months post-transplant, he started online high school classes. He worked hard to catch up through summer vacation so that by the fall he was walking the halls of a high school for the first time.
He managed to complete the year while facing new medical challenges that required several hospital stays and clinic visits. His lungs began to develop bronchiolitis obliterans (scarring and inflammation), which can lead to chronic rejection. He was started on an aggressive treatment called extracorporeal photopheresis (ECP). Each hospital treatment took at least four hours, and this continued for several months. When you add monthly intravenous immunoglobulin and basiliximab infusions, high doses of prednisone that caused migraines and body aches, as well as antibiotics that made him nauseous, it was incredible that he attended school at all.
The good news was that the ECP worked, and his pulmonary function tests showed improvement. However, after a year of stress trying to stay caught up academically, and not knowing what other medical challenges he might later face, my son walked out on the last day of his sophomore year and returned to online education. His was a wise decision because he faced subsequent unforeseen challenges with kidney disease and high blood pressure.
It took a lot of determination and self-discipline — including sacrificing two more summers to additional classes, plus an extra year of high school — to reach his goal. But he did it. On June 15, 2019, he graduated from high school alongside his brother, who is one year younger. It was both appropriate and emotional to see the brothers take that walk together. As the sibling of someone who is chronically ill, my youngest has also made sacrifices, faced fears, and struggled to adjust to a life that is different from that of his peers. Both boys were proud of each other as they received their diplomas together.
In this fast-paced world, people tend to feel rushed into accomplishing things. What my son has taught me through his pre- and post-transplant experiences is that life should be a walk, not a race. You don’t have to keep up with the masses to succeed. If you are always running, then unexpected challenges will feel like hitting a brick wall. Those who walk can see the roadblocks ahead and figure out a better path to avoid them. The journey might be longer, but it will feel more rewarding when you arrive at your destination.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.